Core B: Alzheimer's Disease Down Syndrome Outreach Recruitment and Education (ADDORE)

核心 B：阿尔茨海默病、唐氏综合症外展招募和教育 (ADDORE)

• 批准号: 10037877
• 负责人: Ann D. Cohen
• 金额: $ 209.8万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-30 至 2025-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10037877
• 关键词: Adult; African American; Aging; Agreement; Alzheimer' s Disease; Alzheimer’s disease biomarker; Awareness; Classification; Clinical; Clinical Trials; Cognitive aging; Collaborations; Communities; Community Outreach; Data; Disease; Down Syndrome; Education; Educational Materials; Enrollment; Event; Feedback; Focus Groups; Foundations; Goals; Health Personnel; Individual; Infrastructure; Institution; International; Knowledge; Linguistics; Longitudinal cohort; MRI Scans; Methods; Minority Enrollment; Minority Groups; Monitor; Multimedia; Participant; Persons; Population; Population Heterogeneity; Positron-Emission Tomography; Procedures; Research; Research Methodology; Research Personnel; Resources; Risk; Sampling; Site; Spinal Puncture; Support Groups; Underrepresented Minority; United States National Institutes of Health; Update; Venipunctures; Work; age related; aging brain; base; clinical research site; cognitive testing; cohort; ethnic minority population; health disparity; improved outcome; interest; member; neuroimaging; neuropathology; outreach; performance site; programs; racial minority; recruit; social media; study population; success; symposium; young adult

ADDORE Core Abstract There are numerous barriers to research participation in Down syndrome (DS) that are also complicated by ethnoracial health disparities. A disproportionately higher rate of African American with DS die as young adults when compared to Whites with DS and little is known related to differences in risk for a variety of age-related diseases in DS, including Alzheimer’s disease. The overarching goal of the ADDORE Core is to generate culturally and linguistically appropriate materials, in collaboration with community at large, for increasing awareness and engagement of adults with DS from all communities into research aimed at understanding and treating AD in this population. We will generate and disseminate educational materials regarding the importance of research and research methods targeting AD in adults with DS and increase recruitment of individuals with DS into the ABC-DS cohort from diverse populations and retain existing ABC-DS participants. Successful and unsuccessful outreach strategies will be constantly monitored for updated best practices to be provided to the scientific community. Increased enrollment of adults with DS from diverse populations and retention of existing participants will be the metric for success. This core represents a near unique opportunity to engage researchers and community stakeholders to inform best practices for increasing diversity and engagement within the DS population

ADDORE核心摘要 参与唐氏综合征(DS)研究有许多障碍，这些障碍也因以下原因而变得复杂 民族健康方面的差异。患有DS的非裔美国人在年轻时死亡率高得不成比例 与患有DS的白人相比，人们对各种年龄相关疾病的风险差异知之甚少 DS中的疾病，包括阿尔茨海默病。ADDORE核心的首要目标是生成 与广大社区合作，在文化和语言上适合的材料，以增加 来自所有社区的患有DS的成年人的认识和参与旨在理解和 在这群人中治疗阿尔茨海默病。我们将制作和传播有关这一重要性的教育材料 针对成人DS患者的AD的研究和研究方法，并增加对有以下症状的人的招募 将来自不同人群的DS纳入ABC-DS队列，并保留现有的ABC-DS参与者。成功且 将不断监测不成功的外联战略，以确定将提供给 科学界。增加不同人群中患有DS的成年人的入学人数，并保留现有的 参与者将成为衡量成功的标准。这一核心代表着一个近乎独特的机会 研究人员和社区利益攸关方提供最佳做法，以增加多样性和 DS人群中的参与度